Dazed and Confused

Dazed and confused are the perfect words to describe my state of mind this morning. This whole past weekend seems like such a blur. I keep wondering if we really did participate in "the amazing race" and pull off all that we did in such a short amount of time. From the moment Dave arrived in Omaha on Thursday evening to his leaving at 4:30 this morning I don't think we really even had an opportunity to really talk about all that has happened and about all that is going to take place. All I know is that when I arrived back at the hospital last night the last thing I wanted him to do was leave us here this morning. My heart was broken as I kissed my Blake and Allison on their sickly little heads goodbye and then rushed into the airport to try and figure out how to get around in there. So having Dave leave this morning was just another heart break in my growing list of them. He wanted to catch a 4 hour nap in the waiting room on one of the couches, but I just needed to feel his presence in Ash's room with us. I wanted to make a place on the floor for myself to rest and have him sleep in the recliner and Ash in her crib, but at first he was not going to have that. So his solution to our sleeping arrangement was to climb into Ashley's crib and cuddle up next to her and allow me to sleep in the chair. Although it was very cute to see this daddy tucked in next to our little pickle it was not comfortable for very long. I eventually pulled him out of the crib and tucked Ash back in to the crib, Dave in the chair, and myself on the floor next to his chair. It only took a minute for us to figure out the perfect solution. I tapped my hand on the side of the recliner and he instinctively hung his over the edge. We then drifted off to sleep in the familiar way we do at home by holding hands. It felt so very reassuring to know that he was there with me and Ash. 4:30 came all to soon and as he slipped out to go to the airport Ash and I both woke up and I have spent the rest of the morning cuddling our baby girl trying to get her to fall back asleep. She is finally resting in her crib and I have been able to slip to the bathroom and get dressed.

When I left on Friday I thought we had a definite plan lined up for today, but this morning it just seems to be all confused. No one knows if they plan on taking Ash to surgery to have her line replaced or not, but I am refusing to allow them to use the line that is in to begin the chemo. The line is loose, has almost been pulled out, and one of the ports is clotted off with some old blood because it was not flushed properly. It just looks like an infection waiting to happen. They have already begun running the contrast for the scan into her and have turned off her feeds. They hope to have us in CT by 12:30, and I thought we had a bowel biopsy scheduled for 1:30. I would not be surprised if it gets canceled in the midst of all of the confusion with the other procedures. All I know is that this is the start of a very long week for my sweet Ashley and myself. I am nervous about the chemo. As I read the side effects of the different components of it I am not feeling very confident. These drugs are so dangerous and it seems as though we are gambling with her life once again. I realize we have no choice but in the end it is my name that is signed on all of the consent forms and I am the one who will have to live with the knowledge that I agreed to allow them to do these things to our daughter. It is such a heavy burden I carry. The last consent form I signed resulted in a cardiac arrest and the near loss of our baby. Those memories are not fading as quickly as I would like for them to.

During this time I can feel my faith being tested, being tried and being built. So often I hear people talk about how strong my faith is. The honest truth is that I don't feel strong. My faith is not some amazing thing. It is just a simple trust in the One whom I believe gave this life to me. I am helpless to change the situation that I find my family in today, but I placed my trust in One who is capable. I am helpless to change the state of my Ashley's health, but I placed my trust in One who is capable. I am helpless to bring my family back together, but I placed my trust in One who is capable. Without my simple faith I have nothing. My prayer today is that I will have enough faith, a faith the size of a mustard seed, to move this mountain that stands before us.

Thank you for your prayers, your support, your friendships, and your concern. So many of you have opened your hearts up to our baby gherkin and we truly appreciate the time you spend here on this site and in prayer for our daughter. You have blessed us. Take care. Trish